Dear Supporters of Eddie's Fund:
Eddie has really been struggling this last month. His lungs are worsening and he's been removed from the lung transplant list because he's so sick.
Last night he was rushed again to the hospital; he's having difficulty breathing.
Please do keep our friend Eddie in your thoughts and prayers today. As you can imagine, this is a sad and exhausting time for him, his mom Kori, and his family.
Thank you, as always, for your support of the Fund and of Eddie.
Gratefully,
Melissa for Eddie's Fund
Wednesday, October 30, 2013
Tuesday, October 8, 2013
About Eddie...and all of us
Dear Eddie's Fund Supporters:
Many of you have become friends with me, at least via Facebook. As you know, I write each October nearly every day about living with a child with Down syndrome. Our daughter has Down syndrome; after our son survived his bone marrow transplant, she was born and we re-entered the craziness of a medically-difficult life. I think this is why Eddie's mom and I have been able to stay such close friends; my family's difficulties will never compare to hers, but at least when she talks about a procedure, a med, or the outrageous parking fees at the hospital, I can relate, mostly.
Here is today's post, which was inspired by a conversation I had tonight with Kori, Eddie's mom. Eddie has now been in the ICU for three weeks; he is sick with a spinal infection and we are all worried about him. I could never say enough about those of you who have brought meals, bought them an EasyPass for tolls, and sent donations during this time...I am always, eternally, grateful for each of you.
Give your kids big hugs tonight.
Melissa for Eddie's Fund
My post for Tuesday, October 8th of National Down Syndrome Awareness Month:
I did not go to work today. It was a planned day off; Moriah had an appointment in Boston, and Jason and I are trying, whenever possible, to double-team the more important appointments. Jason keeps Moriah occupied while I talk, take notes, and read my notes that help me keep track of one specialist’s questions for the other, and my own for all of them.
This morning I grabbed a piece of clothing from the back of my closet on my way out the door to the hospital. I thought it was one of my zip-up hoodie sweatshirts; turns out it was a zip-up warm-up jacket in the same color. I put it on in a hurry, and as I was rushing to the door suddenly realized something: That particular jacket is the only piece of clothing I still have from my limited (by two hospital drawers) wardrobe selection during our son’s two-month isolated bone marrow transplant stay at the same Boston hospital. The memories came flooding back after that: Morning jogs on the Fens in that jacket, walks across the street to Starbucks with the jacket tied around my waist, lying down in the garden of Harvard’s Public Health campus nearby in the jacket to weep.
Moriah’s appointment went as it always goes, which is to say, with more heaviness than even we (with our dark senses of humor now fully formed) expected. We waited over an hour to be seen. We heard scary possibilities for future tests and possible diagnoses (the doctor would only name one of these after I promised not to Google it). We were told to call Moriah’s neurologist to explore yet-another scary possibility. We received, as usual, no answers, but were grateful (if that word even applies here) for the sharp mind of this doctor, who brainstormed all kinds of next steps with us. And, as usual, we sat through a traffic accident on the way home and spent hours in the minivan. Which, also as usual, was perfect (which I say with sarcasm) for the half dozen phone calls to doctors I had to make after our visit, given all the new avenues to explore, appointments to change, and a new specialist to add.
I came home tired, but not as exhausted as I often am, and played with Moriah some until she asked for a bath. And as
she was sitting in the tub, making imaginary cup of coffee after cup of coffee for me with her bathwater (that girl knows me all too well), the phone rang. It was my friend, Kori, whose son Eddie has been in the ICU for three weeks now; as most of you know, we met Eddie during our son’s bone marrow transplant. While our son has gone on to health, Eddie has not (you can read more of Eddie’s story here). He is waiting for a double lung transplant, has a serious spinal infection, and has been removed again from the transplant list. He is really sick. We who know Eddie are worried that he is running out of time. I pulled Moriah out of the tub, dressed her, and made it to the supper table before the tears caught up with me. Because there is one memory I just cannot shake: Kori, me, and another mom standing in the hallway of the bone marrow transplant floor. Usually, we were not allowed to congregate (for fear of germ-spreading, each child and their parent were intentionally isolated from one another as our kids’ immune systems were so susceptible after radiation, chemo, and the transplants themselves). As the two other moms and I talked about life on the transplant floor, and marveled at how far removed we were from our “normal” lives, I had an out-of-the-body experience I have never forgotten: I was suddenly looking down at the three of us, and talking to God, and asking, “Which of our children survives this thing?” The silence was deafening.
The other mom’s little girl passed many years ago. Eddie is really unwell. And though my own son, and Moriah, have been through life-saving measures in that Boston hospital and made it through to the other side, the pain is palpable for me too. Like my blue jacket, the grief hangs on my body until I succumb, finally, to weeping, my tears inadequate to release any of my friends, or my own children, from the heaviness of suffering in this life. Tonight, I pray for strength for all of us to bear its weight.
Many of you have become friends with me, at least via Facebook. As you know, I write each October nearly every day about living with a child with Down syndrome. Our daughter has Down syndrome; after our son survived his bone marrow transplant, she was born and we re-entered the craziness of a medically-difficult life. I think this is why Eddie's mom and I have been able to stay such close friends; my family's difficulties will never compare to hers, but at least when she talks about a procedure, a med, or the outrageous parking fees at the hospital, I can relate, mostly.
Here is today's post, which was inspired by a conversation I had tonight with Kori, Eddie's mom. Eddie has now been in the ICU for three weeks; he is sick with a spinal infection and we are all worried about him. I could never say enough about those of you who have brought meals, bought them an EasyPass for tolls, and sent donations during this time...I am always, eternally, grateful for each of you.
Give your kids big hugs tonight.
Melissa for Eddie's Fund
My post for Tuesday, October 8th of National Down Syndrome Awareness Month:
I did not go to work today. It was a planned day off; Moriah had an appointment in Boston, and Jason and I are trying, whenever possible, to double-team the more important appointments. Jason keeps Moriah occupied while I talk, take notes, and read my notes that help me keep track of one specialist’s questions for the other, and my own for all of them.
This morning I grabbed a piece of clothing from the back of my closet on my way out the door to the hospital. I thought it was one of my zip-up hoodie sweatshirts; turns out it was a zip-up warm-up jacket in the same color. I put it on in a hurry, and as I was rushing to the door suddenly realized something: That particular jacket is the only piece of clothing I still have from my limited (by two hospital drawers) wardrobe selection during our son’s two-month isolated bone marrow transplant stay at the same Boston hospital. The memories came flooding back after that: Morning jogs on the Fens in that jacket, walks across the street to Starbucks with the jacket tied around my waist, lying down in the garden of Harvard’s Public Health campus nearby in the jacket to weep.
Moriah’s appointment went as it always goes, which is to say, with more heaviness than even we (with our dark senses of humor now fully formed) expected. We waited over an hour to be seen. We heard scary possibilities for future tests and possible diagnoses (the doctor would only name one of these after I promised not to Google it). We were told to call Moriah’s neurologist to explore yet-another scary possibility. We received, as usual, no answers, but were grateful (if that word even applies here) for the sharp mind of this doctor, who brainstormed all kinds of next steps with us. And, as usual, we sat through a traffic accident on the way home and spent hours in the minivan. Which, also as usual, was perfect (which I say with sarcasm) for the half dozen phone calls to doctors I had to make after our visit, given all the new avenues to explore, appointments to change, and a new specialist to add.
I came home tired, but not as exhausted as I often am, and played with Moriah some until she asked for a bath. And as
she was sitting in the tub, making imaginary cup of coffee after cup of coffee for me with her bathwater (that girl knows me all too well), the phone rang. It was my friend, Kori, whose son Eddie has been in the ICU for three weeks now; as most of you know, we met Eddie during our son’s bone marrow transplant. While our son has gone on to health, Eddie has not (you can read more of Eddie’s story here). He is waiting for a double lung transplant, has a serious spinal infection, and has been removed again from the transplant list. He is really sick. We who know Eddie are worried that he is running out of time. I pulled Moriah out of the tub, dressed her, and made it to the supper table before the tears caught up with me. Because there is one memory I just cannot shake: Kori, me, and another mom standing in the hallway of the bone marrow transplant floor. Usually, we were not allowed to congregate (for fear of germ-spreading, each child and their parent were intentionally isolated from one another as our kids’ immune systems were so susceptible after radiation, chemo, and the transplants themselves). As the two other moms and I talked about life on the transplant floor, and marveled at how far removed we were from our “normal” lives, I had an out-of-the-body experience I have never forgotten: I was suddenly looking down at the three of us, and talking to God, and asking, “Which of our children survives this thing?” The silence was deafening.
The other mom’s little girl passed many years ago. Eddie is really unwell. And though my own son, and Moriah, have been through life-saving measures in that Boston hospital and made it through to the other side, the pain is palpable for me too. Like my blue jacket, the grief hangs on my body until I succumb, finally, to weeping, my tears inadequate to release any of my friends, or my own children, from the heaviness of suffering in this life. Tonight, I pray for strength for all of us to bear its weight.
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